Our mision
We tirelessly work to improve the quality of life of patients with rare diseases and their families, and to create a more fair and supportive future for all
Our goals are the following
To provide comprehensive support to patients with rare diseases and their families, in order to alleviate their suffering and improve their physical, psychological, and social well-being
To raise awareness about rare diseases and improve access to the necessary resources and services for the care and treatment of patients
To support research and the development of effective treatments for these diseases
To advocate for the rights of patients with rare diseases, particularly regarding their access to healthcare and medication
To promote the inclusion of patients with rare diseases in society and remove the barriers that limit their active participation in it